Reprinted from lymeroad.com with the kind permission of Jenny Lelwica Buttaccio.
A Life On Pause
It’s nighttime. Lying in bed wide-eyed and frustrated as the clock ticks, you pray for just a few hours of precious sleep. Insomnia plagues you. Your usual sleep medications have no effect on you tonight. It’s as if you just swallowed some candy instead of a sleeping pill. Tears stream down your cheeks. You bury your face into your pillow and weep softly so as not to wake anyone else. Is this really happening again? As the night bleeds into yet another day, time becomes irrelevant as there is never any period of rest. The sleep deprivation is a cruel form of torture for you with no end in sight anytime soon.
If you could nap during the day, the constant sleeplessness might be easier to tolerate. Lyme Disease wiped out your ability to nap years ago and no one has any solutions for you. Some people want riches or fame, but you, you just want a brain that functions normally. To have a brain that sleeps, isn’t foggy, jumbled or forgetful, is your greatest wish.
A streak of bright, orange light bursts through the curtains. Damn it! It’s morning now. Utterly depleted, you continue with your idle rest in bed as you wait for the alarm to go off alerting you to take your medications.
Almost every medication prescribed to you requires you to take it on an empty stomach. These are instructions you find particularly challenging to follow. Sometimes, you wait more than two hours before eating breakfast just to squeeze in your morning handful of pills.
Invariably, some medication or supplement gets missed. You panic as you rework your entire medication schedule for the day. There is no room for error anywhere. Hopefully, tomorrow you will get back on track. Treatment for Chronic or Late Stage Lyme Disease is regimented and intense. You persist through these demanding protocols in the hopes of having a normal life again.
With the multitude of symptoms you experience daily, you’ve become too ill to work. Career advancement is not a realistic option for you anymore; no landing your dream job; no starting your own business. The longer you struggle with Lyme Disease, the further away the reality seems that you will ever go back to what you once were.
Lyme Disease can be disabling although some medical and political establishments will tell you it’s not even a real disease. Oh, how you would love if this disease were fake, a figment conjured up by your wild imagination. That somehow seems treatable and much less expensive.
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But it’s not an elaborate fabrication or something you’ve concocted for attention. You’re not lazy, unmotivated or a head case. You are not choosing sickness so you can lay in bed all day. This illness is real and it comes with a hefty price tag.
If you have Lyme Disease, you will spend all of your money – every last cent – trying to get well. You will invest tens-of-thousands, if not, hundreds-of-thousands, of dollars on trying to save your life. If you’ve had this illness long enough, you’ve maxed out your credit cards, probably drained your savings, pensions, IRAs or 401k’s. Evidence of a life before Lyme quickly vanishes.
Physicians most literate in treating Lyme Disease are not covered by your insurance. To get well, you will likely need a multifaceted approach to treatment, including regular testing, prescription medications, supplements, and herbal medications. The effort to repair the damage that chronic Lyme Disease has caused is costly, burdensome and at an enormous out-of-pocket expense to you and your family.
Yet, you continually find the strength to persevere. You hold on to hope with fists clenched so tight your knuckles change color. Your hope is in a better quality of life. Your hope is in a future filled with joy and less suffering.
During your battle with Lyme Disease, you have not been able to attend weddings, baby showers, family holidays, or outings with friends. You have had to say, “no,” more than you say, “yes.” By now, you feel the pain of isolation. You wish people understood your illness better or, at the very least, that you had some special superpower that allowed you to articulate the torment raging on inside your body.
You will continue to battle this illness with everything you’ve got, but there’s very little energy left (if any) beyond dragging yourself through each day. You need continued help and support no matter how long this journey takes, but you find most relationships cannot endure this level of hardship over the long haul. Your heart badly hurts as you sense relationships beginning to slip away.
Sadly, most aspects of your life are on hold indefinitely due to this illness. Recovery is long. Thoughts about dating, getting married or planning for a family fall to the wayside. You feel this illness stealing some of life’s most precious opportunities from you as you wait for the moment when you might one day be well again. The future seems so uncertain.
Like so many other chronic Lyme patients, you constantly feel the slow, suffocating effects of a life on pause.
ProHealth Editor and Content Manager Jenny Lelwica Buttaccio, OTR/L, is an occupational therapist and certified Pilates instructor whose life was transformed by Lyme disease, chronic fatigue syndrome, and interstitial cystitis. She is creator of the DVD, A New Dawn Pilates: pilates-inspired exercises adapted for people with pelvic pain. Jenny is a health journalist who writes about her journey on The Lyme Road as she continues to pursue her personal healing with the support of her husband and two rescue pups. You can find her on Instagram: @jenny_buttaccio or Twitter: @jennybuttaccio.